Problems of Alzheimer’s Disease in the Arab World

Problems of Alzheimer’s Disease in the Arab World Dr. Ashraf Al-Kurdi FRCP(London), FRCP (G) Regional and 21st International Conference of Alzheimer's Disease 28th Sep -1st Oct 2005 Istanbul Turkey

The Arab World • 22 countries • common language • Common religion

JordanPopulation Estimates by size, age group(2000, 2005, 2010, 2015, 2020, 2025)

Prevalence of dementia:The Framingham Study 237.5 105.3 17.9 35.8 3.5 9.0 61-64 65-69 70-74 75-79 80-84 85-93

A few short cases to help illustrate the impact of AD on the community

A well-off elderly man suffering from Alzheimer’s Disease was a victim of embezzlement because of his loss of cognitive and judgment abilities by ill-doers – although the amount embezzled was 1,5 million USD his family never reported the case to the police because of social stigma and shame Case 1

An elderly patient with dementia was taken from his hospital bed by his son to write off part of his land- although he was not aware of his decision Lack of regulatory and legislative frameworks for these patients Case 2

Attempting to get a permanent helper for her mother (an AD sufferer) with the aid of the social welfare Department, the woman was denied any assistance based on the fact that her mother’s physical functioning was relatively intact This shows the lack of awareness among governmental bodies. Case 3

A patient suffering from AD and Parkinson’s disease was robbed of his keys that hung on the side of his trousers- his safe was cleaned out and he was left with feelings of remorse quality of life and security Case 4

The Challenge • The Arab World is currently aging as the rest of the developing world. • However, unlike the developed world, this region still does not have the resources or tools to face the socioeconomic and medical needs of an aging population

A perspective on the action • Devise a set of recommendations on actions that must be taken by the medical community and governments to be better prepared for the future

Challenges in AD today: • Lack of Awareness • Challenges with Diagnosis and management • Availability of Nursing homes and /or Day Care Centers • Research work and funds • Genetics and Genetic counseling • Environment

Lack of Awareness: • The lack of awareness extends to governmental bodies and the medical community. • Only recently we have had small group initiatives from within the care-giver and medical community to establish awareness on Alzheimer’s disease as a primary objective of these newly formed organizations.

AD Groups and Awareness • We currently have associations in Egypt, Lebanon, Tunisia, Jordan, Saudi Arabia and Morocco with the rest of the countries to follow

Lack of Data and national Registries • Unfortunately to date, we have no national registries or official statistics on the prevalence of Alzheimer’s Disease in the Arab World

The condition is under-diagnosed • It is fair to conclude that the number of reported cases are far less than the actual existing patients. • This indicates that the condition is under diagnosed.

From our Practices: • The majority of cases present in the later stages of the disease while prognosis is worse and the benefit of drug therapy is limited.

Lack of Awareness: • Our societies consider memory loss as part of the normal aging process and this is largest hurdle to overcome to ensure proper management of the disease.

Factors affecting awareness • Factors contributing to the current awareness challenges are the high level of illiteracy in the region. • This a point of caution when reading into recently published data on small village populations as this will magnify the existence of AD and should be looked at in context and back-drop of the literacy level.

Challenges with Diagnosis The three major hurdles we face today in diagnosis: • lack of validatedpsychometric tests for AD • lack of Inter-disciplinary teams for differential diagnosis of patients • Co-morbidity

Lack of validatedpsychometric tests for AD • There is a burning need for validated psychometric testing in the Arabic language that will be prepared in abidance with our cultural needs and differences. • It is highly recommended to set the completion of these test as a primary goal for our regional initiatives • Establishing cross regional collaboration and team work, as well as sharing best practice in our region

Lack of Inter-disciplinary teams for differential diagnosis of patients • The need to form inter-disciplinary teams (Neurologist, Psychologist, geriatricians, internists, family doctors, neuropsychologist, occupational therapists, physiotherapists, nurses and volunteers/care givers) is evident if we plan to manage these patients on the short and long run.

Co-morbidity • Co-morbidity associated with Diabetes /hypertension, and CHD (Coronary Heart Disease) Lipid- disorders and thyroid Dysfunction etc… • in fact our region has one of the highest prevalence rate of Diabetes of about 30%3, this creates issues of understanding the case and properly diagnosing the condition.

Challenges in management • Availability of AD drug therapy • some acetyl cholinesterase inhibitors and mementine are available in some of our countries (Jordan, Lebanon, Saudi Arabia, UAE , Kuwait) they are still not available in others. • The medical societies must build guidelines on when to start treatment with these drugs and when to stop, this can be provided by joint committees from the larger centers active in this field in the Arab World.

Challenges in management • The question that poses itself regarding therapy is cost • we anticipate that this will grow as our population’s age and a plan needs to be set in motion to ensure that patients receive their medications at an acceptable price through government subsidy or involvement of charitable organizations in co-payment

Availability of Nursing homes and /or Day Care Centers • The Arab world social matrix is fortunately still a familial unit that ensures the well-being and care for the elderly • However… there is room for improvement in the current existent nursing homes, and in the day-care support for these patients.

Availability of Nursing homes and /or Day Care Centers • This is key to ascertain mental stimulation and some form of appropriate re-creational programs that will ensure these patients do not lose the limited functioning that they can exercise in their lives.

Availability of Nursing homes and /or Day Care Centers • The need for Occupational therapy and education for the care-givers and specialized therapists will play an important role as we proceed in the future

Availability of Nursing homes and /or Day Care Centers • We highlight the need for governmental involvement and lead in the process of establishing nursing homes of high standard, as this today is very needed especially by the majority of patients that fall within the category of low socioeconomic class

Research work and funds: • Lack of Statistics and solid data is one of the key issues we face in many medical conditions in the Arab World and this is also applicable to AD. • Unfortunately research in the Arab world is very limited due to lack of awareness . • Raising funds for the purpose of research is highly advisable at this stage to obtain proper data and accordingly a solid base to build for the future and to run comparative analysis with global data.

Research work and funds: • Reasons for this current situation are: • the lack of specialized institutions (Governmental or private) to run properly designed research programs- • the educational environment • The younger generation returning after intensive training in the developed world return to a heavy load of patients and administrative work • Lack of an incentive plan for research and donations to research (example tax exemptions for major donations).

Genetics and Genetic counseling • The genetics of AD is an important factor in diagnosis and early predication. Genetic labs and genetic counseling is still in its infancy and only in a few countries in our region.

Genetics and Genetic counseling • The two basic type of AD are familial and sporadic. Familial AD (FAD) is a rare from of AD, affecting less than 10 percent of AD patient . • All FAD are early- onset, meaning the disease develops before age 65 caused by gene mutation on chromosomes 1,14, and 21.

Genetics and Genetic counseling • Researchers have identified an increased risk of developing late- onset AD related to the apolipoprotein E gene found on chromosome 19. • This gene codes for a protein that helps carry cholesterol in the bloodstream. The APOE gene comes in several different forms, or alleles but three occur most frequently: APOE e2, APOE e3, and e4. • A person with even the most probable genetic link, APOE4, is estimated to have five time higher risk of developing Alzheimer’s disease.

Genetics and Genetic counseling • Work is advised to evolve genetic testing in the region hand in hand with genetic counseling for individuals identified at risk. • People who learn through testing that they have an increased risk of getting AD may experience emotional distress and depression about the future, because there is not yet an effective way to prevent or cure the disease.

Environment • As with other fields, the Arab world is facing growing challenges in coupling environmental development with economic growth, challenges in the area of water quality, land degradation and urban / industrial pollution top the list. Although work is being done, public access to environmental information has not advanced despite the emergence of NGO’s. 6

Environment • It is estimated that the environmental health burden is about 14% of the total burden in the region.6 The cause of AD maybe in our environment-perhaps something in the air, water or soil. • The following will shed light on the main global findings of the existing link to the environment and the disease.

Environment • The reduced capacity to synthesize neurotransmitter observed in the aged population may aggravate the effect of toxic substances. • It has been suggested that one of the more common CNS disorders of the elderly, Alzheimer’s disease, may be linked to aluminum toxicity since elevated levels of aluminum have been found in autopsied brains of Alzheimer patients.

Air and industrial pollution • Calderon-Garciduenas et aL. indicated in their paper a link to pathology in individuals exposed to severe air pollution. • The exposure to severe air pollution is associated with brain inflammation and αβ 42 accumulation, two causes of neuronal dysfunction that precede the appearance of neuritic plaques and neurofibrillary tangles, hallmarks of Alzheimer disease.

Water quality • Increased circulating cholesterol directly affected by water quality is known to promote risk of coronary artery disease. It is now emerging that cholesterol promotes production and accumulation of amyloid g (Ag) deposited in the hallmark pathologic lesion of Alzheimer’s (AD), the senile plaque.

Environment • A better understanding based on the initiatives of the environmental sectors needs to establish the relationship of our environment with the incidence of AD in the region.

The internal environment • Alzheimer Disease may be caused by something within the body. It could be a slow virus, an imbalance of chemicals or a problem with the immune system.

A perspective on the action • Devise a set of recommendations on actions that must be taken by the medical community and governments to be better prepared for the future

Problems of Alzheimer’s Disease in the Arab World